Watching the harvest grow....

This month Mikee has been officially cancer free for one year! Yay! We are now down to visits every 4 months.  It's has not been an easy year we 
are still climbing our way out of medical debt, we still have fears of 
re occurrence, but we have survived.  

Family devotions take on a whole new perspective. As I watch him open the word and read to the kids sometimes my eyes well up with tears... I am so blessed to have him still here. We have grown as a family. We are 
learning to apply our faith in tough circumstances... we are learning
to wait and accept tough answers and be grateful when mercy is given.

This month also marked Cody's High School Graduation. We started with 
PA Virtual when he was in first grade on the 11th he graduated. Two 
down and two to go. So this August both Rachel and Cody will head off to Eastern University. Rachel will start nursing clinicals and Cody will start his first year of premedical studies. And I will be down to teaching two kids at home like I started 12 years ago. It's an odd feeling watching your children
venture out of the safe haven you have created for them. It is scary and wonderful all at the same time. Scary because we don't control the 
variables (not that we ever really did). Wonderful because we get

to see the harvest we so diligently planted come to fruition.

Future and the past....

    Our whirlwind visit to the National Institutes of Health was almost an overload of information and ideas. However I feel good about it. They did
quite a few tests and started genome sequencing.  He may eventually be enrolled in another study in conjunction with the fever syndrome study as well as the other children. 

    I feel as if we are at least on the road to a more definitive answer. With not just Cody but the rest of the kiddos too. It also makes me feel more confident as to sending him away to school. So the plan is for him to
return before he leaves for school in the August and he has started the 
SubQ Actemra injections.

    School is gearing down we should be finished by the end of May. And I
have some decisions to make about next year for the younger ones and myself. We had another OT evaluation for Lucas which basically confirmed
his previous evaluation but brought up more questions then answers. I 
can not help but wonder how much of it is neurological inflammation? Not
sure what direction to go from here quite honestly.

   Today was one of those I just want to cry days. Some of them were
good tears and some tears of frustration.  Cody got the go ahead from
his doctors to participate in a summer missions trip.  Any time he gets to
participate in a normal activity... you know an activity that someone else
wouldn't think twice about doing it's a reason to rejoice.

    The frustration comes because now there is a whole new level possibly
to Luke's issues which is another battle to fight.  And financially we 
are already pushed beyond our limits.  Vehicle, house, and medical issues
are making it hard to keep my head above the water. And yet I am well
aware that I am blessed beyond measure.

    I still have my beautiful children with me. I am able to see their faces and hear their glorious laughter. And although they test my limits daily, I 
am truly blessed.  

    While away at the NIH Mike and I celebrated 22 years of marriage. This year it passed quietly without much fanfare. However our lives together is a testament to God's grace and provision.  At times I have lately I 
have cried out to God asking how much we are supposed to bear... but we are not alone. Last year on the 2nd of May I sat alone in a waiting room while Mike had his cancer surgery.  This year has truly been a faith building, learning to trust year.

Forging ahead

 

  I have thought more than once this past week~ I am not good at this motherhood job.  It was just a normal week not anymore crazy or hectic than any other.

   Of course it was an infusion week and truthfully infusions weeks (or shot
days for that matter) always give me pause. For many years now I made
doctor appointments, picked medications up, fought insurance companies for treatments, prepared and given shots, communicated with doctors, stood by while tests are performed and infusions administered. That part of my job has shifted for at least two of the four kiddos ~ now we have entered into teaching how to be a self advocate. Honestly that is exhausting... 

    However, it is where we are at and like it or not I am in the process of
teaching two young adults to self advocate. Rachel has been doing fairly
well although after being with a pediatric specialist we are finding the adult
specialists are not nearly as helpful. So with Cody's more complex issues
it is a bit unnerving to all of a sudden give him the wheel. 

    It is also highly unnerving that he is beginning his foray into college. Yet this fall the plan is for him to move into a college two hours from home. He
is even pursuing an oversees mission trip this summer. So my job of late
is to be the mean mom. You know, hard-nosed and hard lined, pushing
him to do the outside of his comfort zone things. The accusation, "Are you using applied behavior analysis on me?" has been uttered more than once. :)

    This coming week we head to the National Institutes of Health. This time he signed all the scary consent forms....here we are forging ahead to a new chapter in life.



  

   

   

Opportunities for excellence

    After talking about it for 9 years with the doctors, I decided to go ahead on my own last February and submit Cody's medical records to the NIH. Since he's had some genetic testing which has come back with no

known mutation, the general consensus was because funding is scare he wouldn't be accepted into a study. I really felt though we should try before

he left pediatric rheumatology and entered college. 

    Thirteen months later we got the call! He and I will travel to the NIH on May 7th! I am fully aware that we still may get no answer per-see to what

he has however I believe it is a step in the right direction. 

     For now there are many details to work out. The week we go, Rachel 

is coming home from school... so we need to arrange a way to get her and her things home for the summer when the person who usually does that and has the van (me) will not be around to do it. Also since the winter has been so bad and Mike has already used most of his vacation days he can not come with us.... so we also need to find someone to be with

the younger two till he gets home from work Wednesday, Thursday and possibly Friday.  

    I have to admit I feel so unprepared. For years we kept charts of symptoms, fevers, and such. When it became clear that no diagnosis was 

on the horizon... we just started soldiering through it.  Also as each of

the other kids started showing symptoms it began to be just a chore to

keep my head above water some days.

  

    It's now almost 6 am and I've been awake since about 4:30 ugh! In a 

little while I have to get up and go grocery shopping... the cupboards are

a bit sparse.  Lucas has an OT evaluation this morning so I want to go before then.

     I am praying for guidance about school next year and work. I have an opportunity to work more hours but I'm concerned about school with

Lucas.  He's made great strides this year and jumped 4 grade levels in 

reading. I don't want him going backwards because I'm not there as much.

Praying for and about a solution.

     This week did not start out the best. On Sunday as we got ready for 

church, Hannah noticed the downstairs ceiling was dripping. The ice maker

hose had a leak in it. So the floor boards in the kitchen upstairs and the 

ceiling directly under the fridge downstairs were water logged. Mike and

Cody spent the morning then fixing the hose and taking down the ceiling 

downstairs. When Mike and Cody went to the hardware store for a new 

hose the spring on his passenger side door came off.  :) Mama said there be days like this.

     

    In a bible study I've been studying about Ruth. Ruth was called a

women of excellence not because her life was perfect... her husband 

died, she moved o a foreign land with her mother in law etc.  But she 

trusted God and he provided for her. I want to be a women of excellence 

too. 

       

Just keep going...

  The past two months have been atrocious! We've had more snow than I 
have cared to see, in fact we are just actually starting to see grass 
again! 

   I feel like a first year teacher all over again this year. I have gotten 
every little bug that has come along this winter. This may be part due to the medicine I have been put on for the Still's Disease. I truly feel as if I've been in some stage of a cold since Thanksgiving.

   We are entering that phase of school where there is no break till Easter
which can be a bit tedious. All these snowy days do not help... the good thing about cyber/homeschooling no snow days... the bad thing about cyber/homeschooling no snow days. 

   I read this today and it bears sharing~ to remember then things are tedious and hard... on particularly rough days when I am sure I can't
possibly endure, I remind myself that my track record for getting through bad days so far is 100%. And that's pretty good.

   The truth about life is it does go on even when we don't feel like it
should. The past two months I have been fighting off the enemy and it's wearisome. I waffle between feeling as if I am not doing anything well to feeling un- and under appreciated. Many days I have wanted to stay in bed with the covers over my head. But I remember that I am not alone in this journey and I cling to 2 Cor 4:8&9 We are hard pressed on every side, but not crushed; perplexed, but not in despair;persecuted, but not abandoned; struck down, but not destroyed.

   


  

You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand

And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You've never failed and You won't start now

So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior
[x6]

I will call upon Your Name
Keep my eyes above the waves
My soul will rest in Your embrace
I am Yours and You are mine

A grandfather's legacy.

We are all leaving a legacy. Is it a good or bad one? My grandfather passed into eternity this morning. He was turning 90 in a month. He was a preacher and he preached with his life not just his words.

When I was probably 13, I went to spend a week with he and grandma.
His sermon is one that to this day I remember.  It was about rose colored glasses. How that God sees his children through rose colored glasses.

He spoke about how when we came to Christ, and were washed in the 
blood that the Father did not see our old sins. Because he saw us through the blood of Christ. I'm not sure why this particular sermon sticks in my
memory. I do know that when the accuser comes to remind me of how often I fail... this is what I fall back on~ that I'm forgiven and my heavenly father looks at me through rose colored glasses.

Thank-you Grandpa. Thank-you for showing us a life well lived in Jesus.

Merry Christmas and Happy New Year!

For the past couple of years it has seemed as if January couldn't come soon enough... I was ready for a new year.  Funny this year has probably been the hardest in at least the past twenty two years.  And although I am not totally sorry to see it go I can't say it was a bad year either. Hard yes~ bad well not really...

You see although it has been tremendously hard year, we have been
blessed beyond measure. Mike's cancer, the financial issues that ensued from that, other various trials like little foxes stealing grapes threatened our faith and sanity at times. And yet by God's grace and mercy we are still standing. Over and over again God has shown himself faithful, even when we were faithless, providing in ways we couldn't even imagined.

I am often like the children of Israel wandering in the desert, I forget too quickly the miracles God just performed. I am learning to trust 
my deliverer. This year has been a long lesson in learning to trust Him.

Tomorrow is another milestone. Cody turns eighteen. Eighteen! Ten years
ago we were discussing heart valve replacements and tomorrow he's eighteen. We still haven't had a miraculous healing ~heck we don't even have a  for certain diagnosis.  But I can say without a doubt after this year especially that God has a plan and He keeps his promises and I know he has something for Cody to do. And Mike and I are blessed to be a part of that plan.

One of those days....

It's been one of those days. We had snow this week. We had almost as much snow as we had all last year in the beginning of this week. Don't get me wrong it's beautiful and I'm sure the water table could use it but ugh!

So this week we found out that neither Hannah or Lucas's snow boots fit, the water proof gloves have disappeared, and only one of them has snow 
pants. Neither one one will come in until everything is soak and frozen
... and arthritic joints don't respond to well to that. I keep having  to say 
'you can go outside but,you can't come in and cry later if you overdo it'.

Mike's mass seems to be a complication of his surgery. Where a lymph node was remove it seems he has accumulated some lymphocytes which have become infected. So he is to have six weeks of antibiotics and if that doesn't clear it up it will have to be drained.

I am pretty exhausted. Lucas has started not sleeping again since all this with Mike. So a couple times a night he is awake... not good for him or me. Makes for a hard school day also.  The one thing that was nice about the 
snow days per say is that I got to do school with the younger ones like normal... nowhere to run just a cozy day at home with school.  Well Monday was a rough day but that is a whole different story.

The older Lucas gets the more his Dysgraphia is an issue. Disgraphia is
a learning disability that affects writing, which requires a complex set of motor and information processing skills.  It can lead to problems with spelling, poor handwriting and putting thoughts on paper. We thought an adaptive technology piece would level the playing field for him, but so far speech to text has been more trouble then helpful. He is so bright we just
need to find a way for him to be able to express himself in writing.


To those of you uplifting us in prayer~ I just want to say thank-you so 
much! We can feel them! And we continuously need them.

I am lighting a candle instead of cursing the darkness.

Second Samuel 22 verse 29 says ' You are my lamp, O LORD; the LORD turns my darkness into light.  I read the other day that gratitude trains the eyes to adjust to the dark.  I believe this means God’s word lights the path, but sometimes only enough to put one foot in front of the other. We can’t see the big picture of what is going on around us. We can only see what God has chosen to reveal to us.

Sometimes clinging to faith is lighting a candle instead of cursing the darkness.  Faith is like light... darkness cannot exist where there is light and doubt cannot exist where there is faith.  In this marathon of life we need the endurance that faith brings.

November for us has been a month of illnesses. Infections both viral and bacterial have hit hard.  We started out celebrating Mike having two psa's of zero ended with them finding another 4cm by 4cm mass.

(We go Tuesday to have that checked out)

I could (and I would be lying if I didn't say I have not been tempted) to give into despair, crawl into my bed pull the covers over my head and stay there. To say it's not fair!  

I took Rachel back to school today. I had the privilege of having Lucas (my 10 year old) as my copilot. He literally talked non stop for 2 hours on the way home... but I was blessed to hear his thoughts on quite a number of topics. :)

One of the many things he shared with me was how life seems harder when your  Christian.  Because the world isn't the way God created it to be and so we just don't fit.  In his 10 year old way he was speaking deep truth.  Bad things happen because this world is a fallen one. Things don't make sense and 'we don't fit'.  But we are not without hope... 

2 Corinthians 4:9 says ' we are persecuted, yet not abandoned; knocked down, yet not destroyed.' And I am lighting that candle and clinging to it's truth.

Hello November ...

Things have been crazy busy here!  It's hard to believe that we have been in school for three months... that come Spring we will have another soon to be college student.

I am loving my job working with autistic kiddos. Our school schedule is
finally adapting to our schedule changes. Mike is doing a wonderful job 
co-teaching!

This is my favorite time of the year... I absolutely love Thanksgiving and Christmas. I love the emphasis on family, gratitude & joy. We have so 
much to be thankful for this year.  It has been a tremendously rough year. 

It's easy to become so focused on the negative things that we lose sight
of the positives.  Just today we took a couple hits.  Mike has a pretty bad infection on his leg from what we think was a spider bite.  And after years 
of dealing with the kids rheumatological issues and wondering if my issues were related...  I received my own tentative diagnosis Still's disease. From
the cancer fight and subsequent issues our finances are a mess. It is easy 
to become downcast.  But I am encouraged because God has proven 
Himself to be faithful!  

I love this quote by H.U.Westermayer~ The Pilgrims made seven times more graves than huts. No Americans have been more impoverished than these, nevertheless, set aside a day of thanksgiving. ~It reminds me that thankfulness is so very important. Because it takes our eyes off 
ourselves and puts them on God.  It reminds us how in the grand scheme
of things our God is big and our problems small, not the other way around.

Psalm 27:13 says ~ I remain confident of this: I will see the goodness of
the LORD in the land of the living.  Thanksgiving isn't one day a year... 
it's a way of living everyday of the year.

What are you thankful for?

I'm so glad I live in a world where there are Octobers

I'm so glad I live in a world where there are Octobers~ Anne of Green Gables

I know I've said it before but I adore fall. I love the changing colors of the leaves and the crispness in the air. I love that we can snuggle under a throw on the couch with a cup of tea and get lost in a good book.

However, in our house fall brings with it some challenges. Chilly mornings are hard on joints. Damp days can be the cause of great discomfort. School work can be a bit more challenging with stiff fingers.  Most mornings it is a struggle to get out of bed.

We have found those electric throws are wonderful! Plug them in and wrap up in them for morning devotions helps with the stiffness. Warm showers help too and sometimes an ice pack does the trick.  Having a positive attitude is a must.

Cody has had a great deal of difficulty in the past month some new symptoms have developed which sent us to Gastroenterology... which resulted in an appointment for an endoscopy and colonoscopy. Also with the government shut down it would appear that any trip to the NIH is on hold. Hannah's steroid shots for her jaw helped a bit but her ankles and knees have been bothering her so much we are switching from Methotrexate to Enbrel. Lucas has a great deal of inflammation in his sacroiliac joint and hip so a stronger NSAID is in the works for him.

 So although fall is beautiful it is an adventure at times. Of course joint pain of arthritis is not limited to fall we do tend to see more flares during the change of seasons. These challenges are exhausting at times... slow mornings and tired afternoons. Fall is the beginning of our Thanksgiving season and believe me it helps when you don't feel good to concentrate on those things you are thankful for. To remember 2 Corinthians 4:17 For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison,

Amazing Grace

How beautifully leaves grow old.  How full of light and color are their last days.  ~John Burroughs

The past three weeks have flown by so quickly. This year we decided to
start the day off with family devotions.  At 7:30 three sleepy headed 
kiddos make their way to the living room and we read a passage of 
scripture, have a short devotional and pray as a family. It has been 
fantastic! I love to hear my children pray especially for one another. 
Now just to keep it real those same kiddos will be arguing with each 
other at the breakfast table, about 10 minutes later, so I'll take what
I can get. :)

One thing I'm certain of is the enemy of our souls does not like us having family devotions. It has been amazing the additional challenges our family has faced since we started.  The first couple weeks of school have challenges all their own...but we've had some special ones of late.  Last 
Tuesday after a particularly good morning of school. I walked downstairs
to change the laundry... and wait is that water I see...

No not water.. it was sewage! The float switch on the ejector pump failed
and my lower bathroom/laundry room and hallway to and part of the family room was covered in sewage.  Then a day or so later I go out to the van and it starts sputtering and carrying on.  The wires connected to the wire harness all melted together. Yep all kinds of special challenges.

I would like to tell you through everything I have been calm,cool, and collected. A paragon of how to trust God in difficult times ~ but we're 
keepin it real remember.  I am learning though...

It has been a amazing lesson for us in God's faithfulness. It has been a
way for us as a family to present our needs to Him, to ask to see more 
of His glory and to see that He is still working, and then to see His
provision.

We covet your prayers we still have a lot to do and some needs to be met.

But isn't His grace amazing!

First days....

We've had a busy couple of days.... First day of school Monday for the Cody, Hannah, & Lucas. Dropped Rachel off today and her first day is tomorrow.  Sometimes I'm not sure how we got here. Time seems to go by more quickly than I'd like.  This is our 12th year of cyber homeschooling... there are days I think I have this figured out and others I think why am I doing this?

This year I did have it together enough to take pictures:

                               A senior, 7th grader, & 5th grader.

Dropping Rachel off this year was harder and easier at the same time. Last year was fraught with emotions and anxiety (on her and our parts). This 
year she was confident and excited. Me, I was proud! You see we planted with the harvest in mind and I can't wait to see what the Lord does in her life.

I was not on the ball enough to get a picture of Rachel at school. I did however find this picture from nineteen years ago. Nineteen years ago

I never in my wildest dreams thought about the time when I would drop this sweet babe off at college.

Here's to a fantastic new school year!